After a birthday party at a local park for Kali's friend Maia who was celebrating her 4th birthday, we headed over to Charlottesville. As we neared and drove past the hospital, my body clearly remembered many of the emotions of our trips to and from that place (the butterflies in the stomach, the anxiety coursing through me...).
When we entered the school of nursing we were directed to tables where we could put the mementos of Nora that we brought along to share. Sometimes in moments like that, I still have a hard time believing that we have joined many other parents that have lost children. We added our items to tables full of pictures, objects, music and videos commemorating the lives of these little ones who were much loved and are now missed. After dreaming last night that the service was awful (in my dream we saw no one that we knew and they didn't mention Nora's name or any other children's names), I went with minimal expectations. We were very glad that we went. It didn't take much to get the tears rolling for me. Kali responded as she often does in such settings of high emotion - she was calm for awhile, went through an agitated state for a few moments and then settled well for the remainder of the service.
I had never met any of the other 300+ children who have died in the past 2 years (and who were cared for on the 7th floor at UVA). But each of their names crossed the large screen at the front of the auditorium multiple times throughout the service and each of their names was read, giving family members the opportunity to put a carnation in a wooden "tree of life" at the front. Kali was eager to participate. I hadn't thought about my need to prep her for her task so was a bit taken aback when she went ahead of me and promptly pulled a previously placed carnation out of a slot to put hers in. Thankfully I was only steps behind and was able to return the original carnation to its rightful spot and redirect her to many other choices for spots on the tree. We so wanted Kali to be there and I'm so glad that she can add the service to her bank of memories in our family's process of saying goodbye and grieving Nora's death. BUT it does change the experience drastically for her parents!Sitting right in front of me was a mother I remembered from the NICU. We had a chance to talk briefly as she remembered me immediately as well. She was a young black woman who I met one day in the "pumping room." We were drawn together by our desire to provide the best we could for our little ones - her baby was born premature and was a fraction of Nora's size. Jordan lived just 22 days. I well remember one day seeing her crying in the lobby and she told me he had an infection. Later on I saw others around her and I wondered if he had died. He had, just days before Nora came home with us.
Two parts of the service stand out to me. The first was when one of the nurses that had cared for Nora shared from a staff perspective. She shared how much the children she works with teach her and how those of them on staff do not forget these little ones who come in and out of their lives. She mentioned some names of children that stand out in her memory and what they meant to her. She mentioned Nora, her little body and her amazing spirit.
Later in the service, Dr. Noreen Crain, who we have come to deeply admire and appreciate, sang two pieces. I include the words of the one entitled "Lost Days" here. It was sung in Spanish but I'm including the English translation:
Los Dias Perdidos
Carlos Guastavino
"I want to sing my song as the bird sings.
I want my solitude to be sad
And I want, even though there are tears in my life,
A way to cry that is practical and smooth
My tired heart suffers and knows
That without crying out, its voice, being injured,
Is like the sweet promised branch
That grows upward only to find a dull and heavy fate.
For this reason I try to interlace my pain,
So that it may harmonize and be at peace
With the musical message of the wind
And that my verse, among the green grasses
May say simply what I feel:
That it is lost in this age of fright."
We were grateful for a chance to connect briefly with Dr. Crain after the service and will likely see more of her in the future. We are looking at participating as "faculty parents" in a conference at UVA in October on palliative care.
We also talked with the resident who worked with us during our final stay at UVA. It surprised us not a bit to have her remember Nora and her little binky! Seeing faces of persons who journeyed through those final days with us and to know that our journey is now woven into the tapestry of their work and their lives is somehow comforting.
I think that's about all I can put to words tonight. Maybe Jason will want to add something. We enjoyed a stop in Staunton to take in part of a soccer game where we also go to see and visit with good friends/relatives. We chatted for quite some time after all the athletes and spectators had cleared out. And Kali got lots of exercise running back and forth the length of the field. We ended our evening having a "silly dinner" of ice cream on our way home.
Jason writes: It is typical for me to need to ruminate about such experiences for a while before I have any distinct thoughts that I can form words around. Essentially it was just good and emotional to be there. UVA, at least in the portions of it with which we have made contact, seems to be an institution formed for caring, and formed by caring. Also the herbed goat cheese bruschetta that was among the delectables in the post-service "snack" was scrumptious indeed. I was humbled and a little taken aback by the shear numbers of families there. UVA serves a lot of kids, and even the best medicine can't keep them all with us, as we well know. I am looking forward to the palliative care retreat even though my perceptions about what to expect feel rather murky, but sometimes you just have to try stuff. I am intuiting from the information we have gotten to date that the palliative care approach being refined at events like this retreat is, by way of choices made by its pioneers, elevating the stories of children at the end of their lives (and their families) to equal footing with the offerings of the medical, psychological, etc. communities. While this is perhaps an imprecise and indirect way to learn, it is a very human way, and at no time in my life have I been more grateful for the ability of professionals to maintain a sense of their own humanity and of mine than in the weeks, days, and hours leading up to Nora's death.
Janelle just carried a sleeping five-year-old into her room after rocking and singing her to sleep in the front room for the first time in recent memory. I can't imagine that would usually work for our energetic girl, but she had a really big day. It also "worked" for her mommy, I think, because I heard some emotional-sounding sniffles accompanying the humming at the end. We are both so grateful for our healthy, vibrant girl, even when we want our tiny, weak one back again. In a recent spontaneous moment I mentioned to Janelle what a lucky person I feel I am. She said, "A lot of people looking in at this point in your life might not think that." I can't adequately express (yet) the deep and abiding sense of goodness I feel permeates our lives, and which permeated Nora's life and death. Perhaps I will someday recognize this same goodness in every person, even every living thing. It has taken knowing Nora to clarify it in my mind thus far; what upcoming encounters with the essential will be the touchstones that broaden my perceptions?
Janelle just took notice aloud that today marks exactly one year since the onset of the prescribed bed rest that accompanied the scary pregnancy that brought Nora into our lives. Most of the years of my adult life have been accompanied by a progressive acceleration in my perception of the passage of time; i.e., the years get shorter. But this past year has been very, very long.
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